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Not Sure If My Symptoms Are Celiac Or Gluten Intolerance
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Hi there,

 

I am new to this forum. I been having issues with my health for the past few years and my doctor has done almost every test under the sun. The past couple of months I finally got fed up with how crappy I felt and went to my doctor asking him if I could have a test for celiac disease again. He told me that since I had a test two years prior that he didn't want to do another one because that test came back negative. He told me that if I wished I could eat a gluten free diet if I thought it would make me feel better! Nice! 

 

Since I feel like I won't be getting anywhere with this doctor I decided to go strictly gluten free for a few months to see how I feel. I mentioned to my doctor again that I am trying the gluten free diet and he said that likely I am not celiac because my recent blood work all came back normal. My iron is up as well as my vitamin B12. Can you still have celiac or gluten intolerance and have normal bloodwork?

 

Here are the symptoms that I have been having which sounds a lot like gluten intolerance to me (or possibly celiac??). I know that if I eat something with gluten in it I don't feel well shortly after eating it so there must be something going on there.

 

-extreme fatigue (most weekends spent sleeping during the day)

-waking up feeling exhausted after sleep 8 hours a night

-weight gain (can't lose weight in stomach and legs despite trying)

-a lot of water retention/bloating in stomach

-headaches, diarrhea or sometimes constipation, upset stomach shortly after eating anything with gluten)

-tingling and pins and needles from my mid-face to my toes on both sides (tests done to rule out other causes)

-brain fog

-my entire body hurts (joint and muscle pain)

-lower back pain

-panic attacks and anxiety at bedtime

-stuffed sinuses

 

For the past week I have been strictly gluten free and I am starting to feel better already. I have lost 3.5 pounds and my energy and brain fog has already improved. I am still having body pain, back aches and tingling. 

 

Should I maybe go to another doctor for a second opinion which of course would mean I would have to go back to eating gluten again? 

 

Thanks for your help.

Carrie

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Hi lovechild, welcome to the forum

That is a very familiar looking list of symptoms.

If you do want to change Dr, if you tested very quickly you could try and minimize how long you need to eat gluten for a blood test. It might take longer to get a biopsy done.

Do you have a list of the tests you had done? You will find the recommended panel on the board, or someone will pop by with it soon.

Sounds like you have taken the first steps to finding out if gluten is your problem. You are in good company, ask lots of questions

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Hi Lovechild-

Doctors dont take it as seriously as they should. My Dr. at the time said you most likely didnt have it. I asked for the test when my aunt came to me as said 4 aunts have it, an several cousins. Turned out, I did.  I recommend being persistant its your heath. In the mean time go gluten free, it wont hurt you.  Do it long enough....may take some time to see a real difference. I am not to sure about some of the symptoms, like high iron, usally its lower with Celiac (anemia and all) and lhigh b12...your are vitamin deficient with Celiac.  it can be super frusterating when your not well and you cannot understand why. I felt the same.  I cam here all those years back and it helped me so much.  GOOD LUCK!

 

Rebecca

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The stuffed sinuses sounds like dairy but the rest could be gluten.

 

You should ask the doctor for a copy of your past Celiac test.

If it was just a tTG test it's not enough.

A panel covers more bases.

 

Total IgA
Transglutaminase IgA tTG-IgA
Deaminated Gliadin IgA DGP-IgA
Deaminated Gliadin IgG DGP-IgG

 

But you have to be eating gluten to do the test.

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Hi lovechild, welcome to the forum

That is a very familiar looking list of symptoms.

If you do want to change Dr, if you tested very quickly you could try and minimize how long you need to eat gluten for a blood test. It might take longer to get a biopsy done.

Do you have a list of the tests you had done? You will find the recommended panel on the board, or someone will pop by with it soon.

Sounds like you have taken the first steps to finding out if gluten is your problem. You are in good company, ask lots of questions

 

Thanks for your message. I unfortunately don't have a list of tests that I have done to detect celiac disease. I believe my doctor only tested for one antibody and that came back negative. I can't really remember if I was eating much wheat back then anyway as I usually don't eat a lot of wheat anyway. I am hoping after I have been off the gluten for a while and I start to notice big differences in my symptoms only to go back on gluten and have all mty symptoms return that my doctor will take me seriously. Either that or I will have to find another doctor.

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Hi Lovechild-

Doctors dont take it as seriously as they should. My Dr. at the time said you most likely didnt have it. I asked for the test when my aunt came to me as said 4 aunts have it, an several cousins. Turned out, I did.  I recommend being persistant its your heath. In the mean time go gluten free, it wont hurt you.  Do it long enough....may take some time to see a real difference. I am not to sure about some of the symptoms, like high iron, usally its lower with Celiac (anemia and all) and lhigh b12...your are vitamin deficient with Celiac.  it can be super frusterating when your not well and you cannot understand why. I felt the same.  I cam here all those years back and it helped me so much.  GOOD LUCK!

 

Rebecca

Thank you very much Rebecca. How long before you started to notice your symptoms diminishing once going gluten free?

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The stuffed sinuses sounds like dairy but the rest could be gluten.

 

You should ask the doctor for a copy of your past Celiac test.

If it was just a tTG test it's not enough.

A panel covers more bases.

 

Total IgA

Transglutaminase IgA tTG-IgA

Deaminated Gliadin IgA DGP-IgA

Deaminated Gliadin IgG DGP-IgG

 

But you have to be eating gluten to do the test.

I actually don't eat a lot of dairy for that exact reason (like 2-3 times a week max and no milk) and I still am stuffed up. Thanks for your message. I will see if my doctor will give me my test results as I think he only did one test and not the panel.

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